Dr. Zhou moves towards me with a bin of materials, glancing down to sort through them with one hand. He sits on a wheeled stool on the other side of the small table from me, puts on a pair of latex gloves, and looks for my permission before leaning forward to grasp my left wrist gently with one gloved hand. I try not to be too obvious about letting out a shaky breath as he coaxes my left arm into position on the table, easily containing its flailing. “Please let me know if I do anything that makes you uncomfortable,” he says in his soft voice, making direct eye contact with me for the first time since greeting me. I blink in confirmation, and he starts pulling materials out from the bin, setting them in order.
“So you,” Dr. Field says, “are going to be our first trial with a subject whose impairment is more on the severe end of the spectrum.” Her voice is matter-of-fact, yet warm. “We’ve seen great results, really exciting ones, with folks who came to us with lower levels of impairment, and those trials in turn gave us loads of data for improving Priya’s software.”
“Is it all people with athetoid?” I ask. I had been curious about this ever since I’d first submitted my answers to the detailed questionnaire about my mix of symptoms, range of movement, range of control.
“It’s a mix,” she says after a pause to think. “Mainly we’re looking for people without fixed contractures, because that really limits our ability to see short-term improvement, unfortunately – although obviously it’s something we’d be excited to work on in the longer term, restoring function…
“So, relative to the general population of people with cerebral palsy, people with athetosis, even ataxia, are probably going to end up overrepresented among our subjects,” she concludes, “since spasticity goes along with contractures so much more.”
Joel lets out a “hm” of interest.
Dr. Zhou signals to catch my attention, and shows an alcohol-soaked gauze pad to me in warning – I catch its sharp smell – before he starts briskly wiping down my whole arm, even my shoulder, with it. I blow out a puff of air when the chill of the evaporating alcohol hits and watch as the hairs on my arm stand up; my arm jerks back and forth weakly at the elbow, the only motion available since Dr. Zhou is still firmly anchoring my wrist.
“We can turn on a space heater for you if you need it,” he says, motioning to indicate one tucked under the table.
“That might be nice at some point,” I admit.
He nods and picks up a black Sharpie and a small plastic instrument, about the size of an electric razor, with two metal prongs: “I’m going to be locating major innervation sites now.” I nod against my neck brace, and as Dr. Field asks me about my physical condition today, and tells me about the data they’ll be collecting – video, nerve conduction, qualitative reports from me – Dr. Zhou proceeds to press the pronged instrument along my collarbone, shoulder, and arm, marking occasional sites of contact with Sharpie dots. Some places, he follows up by attaching a little electrode. Others, some even on my hand, he marks with round, bright blue stickers – “That’s for motion analysis of the videos later,” Priya surprises me by putting in. She’s finished up at the computer, and has scooted over on another stool to watch the preparations.
I’m surprised by the realization that at this point, my self-consciousness has drained away. I feel centered and expectant. Dr. Zhou’s methodical work, Dr. Field’s questions and descriptions have been absorbing; the underlying excitement and anticipation in the room is palpable, and infectious. As if aware that it’s not in the spotlight, my right arm has calmed and lies limply in my lap, shaking only occasionally.
“Priya,” Dr. Field says, “while Dr. Zhou is getting the device in place, do you want to give Matthew a rundown of how your program works?”
Priya’s face lights up; “Sure,” she says.
“So you can think of it as two parts, or two functions,” she begins, scooting forward on her stool till she’s more comfortably in my field of view; I give a small smile of appreciation. “One is subtractive, a filter. It looks at the nerve impulses that your brain is trying to send, and kind of cleans up –“ she makes a brisk sweeping gesture “— all the things that are confusing or off-base.”
“Okay,” I say, glancing down to my left arm, which Dr. Zhou has temporarily released; it flops and twists at random against the tabletop. There’s a lot of confusing things going on there.
Priya’s eyes have remained on my face. “So the filter part does its best to make sure the confusing signals don’t actually get executed. If you know how noise-cancelling headphones work, it’s actually kind of similar…”
“Destructive interference?” I guess, reaching for high school physics – wave forms colliding and cancelling each other out.
“Oh, yes, exactly!” She looks delighted, and I get to feel good about myself. She adds, “Well, it’s a bit different with nerve signals instead of sound waves – and it’s called ‘collision annihilation,’ which I think sounds much more exciting.”
I smile; it does sound like something that would happen in outer space.
“Okay,” Priya says, visibly pulling herself back on-track when it’s clear she’d love to dive more into the details. “The second part of the program is additive – it strengthens. After the filter has done its work, it takes what’s there, it identifies your intent, basically – “ she sets one fist out to symbolize “intent” – “and reinforces it.” Now she clasps her other hand over the fist, building on it. “And that’s based on all the data we’ve collected from subjects with no impairment. So,” she sums up with a shy grin, “ideally, no more bad signal, all good signal. And the best part is that with Dr. Field and Dr. Zhou’s hardware, we can do it all noninvasively.”
I swallow thickly, pause for a moment. “I’m getting so excited that I don’t really know what to say,” I say finally, with a level of honesty that I would usually avoid. That gets a chuckle from most everyone in the room; Dr. Zhou gives me a surprisingly broad smile as he leans forward and begins strapping a set of small black devices to my shoulder, one just beneath the end of my collarbone, the other in a corresponding position on the back of my shoulder. They’re unexpectedly heavy, and I feel a chill as an array of blunt metal prongs in their surfaces make contact with my skin. I imagine that I feel a tingle of electrical current.
“This is a weaker version of what we would be able to do,” he puts in, “if we actually implanted electrodes. But, obviously, there are trade-offs there.”
Do it to me, I want to say. Give me implants. Fix me. But I say nothing.
I can just barely see over the edge of my neck brace that, to finish arranging the devices, Dr. Zhou will have to harness them around my chest, too. He looks to me. “Do you mind if I unstrap you, or would you prefer if Joel…?”
“You can do it,” I say boldly, making eye contact. He looks at me for a moment, during which I can’t read his expression, before he carefully opens my chest strap, leans me forward to secure the devices’ black harness around my back, and then redoes the strap, settling me back in place.
“Okay,” he says, extending a couple of long leads from each of the devices and handing them to Priya, who eagerly plugs them into what looks like a hard drive; the leads from the white electrodes scattered across my arm, he plugs into yet another device. I’d feel nervous about the assortment of trailing wires if it weren’t clear that they’re long enough that even I wouldn’t be able to yank them out.
“Okay, one more thing.” Dr. Zhou turns back, fixes his dark gaze on me. “Matthew, we’re going to be asking you to try a lot of movement with your left arm. Would it be more comfortable, less distracting for you, if we secured your right arm?”
I grimace. “Probably, yeah.”
“Okay. We have a cuff, here –” he shows me a broad Velcro strap.
“That should be fine,” I say shortly, and he moves around the table to cuff my right arm to its armrest at the wrist.
Having my arms strapped is actually something that I’ve gone back and forth on, in my life; for the past couple of years, I’ve been going without, in a concession to the ongoing campaign to convince me to act like I don’t entirely resent my body.
“I think,” Dr. Zhou says, “we’re ready to go.”
“Oh, my,” Dr. Field says, and she actually clasps her hands together with excitement; I kind of think that I might do that too, if I could. Joel leans forward in his seat, resting his elbows on his knees.
“Everything’s ready to record,” Priya says, the shy grin back on her face.
“Okay, okay,” says Dr. Field, pushing back tendrils of her hair excitedly, and stepping forward to stand next to Dr. Zhou across the table from me. “Matthew, we’re going to start with some baseline recordings of your natural movement.” It’s not natural, I want to say, but again don’t. “You’ll see a line of large black dots on the graph paper on that table. Can you please do your best to line your arm up with those dots? Whatever you can do; there’s no ‘wrong’ here, we’re just collecting information.”
I take a deep breath. Once more, my heart is pounding. While finishing up with the devices, Dr. Zhou had moved my thin left arm – now spotted with white electrodes and blue stickers – back to my lap. Let’s go, I say to myself, and seize the fraction of control available to me to lift that arm towards the table.
It arrives above the table and gets stuck there, flailing back and forth horizontally about a dozen times before I can convince it to flop to the table’s surface, where it continues shaking back and forth, at least roughly centered above the axis marked out by the black dots. “Is this what you’re looking for?” I say, trying not to sound too sarcastic.
“Yes,” Dr. Field says, “that’s great, thank you. Now I’m going to ask you to try to touch each of the large red dots that you see at the corners of the table.”
Again I try, and manage to sort of swipe the back of my hand over the first dot, but get stuck there, and can’t for the life of me coax my hand, or arm, to shift to the other corner; at this point my arm might as well not belong to me. “Not happening,” I say tensely, watching my arm thump against the first dot.
“That’s fine,” Dr. Field says, her voice soft and neutral. “We’ll do a few more of these –“ and she leads me through about a half a dozen more exercises, while Dr. Zhou explains that they’re isolating horizontal motion, vertical motion, motions of the hand, elbow, etc. “Isolating” seems like a more than generous way of characterizing it when my body is involved; it can’t have been more than five minutes, but I’m straining both my concentration and my meager physical endurance to the limit trying to accomplish anything resembling what they’re asking for. The more they ask of me, the sloppier and sloppier my motions grow, increasingly random; even my right arm strains and twists against its Velcro cuff.
“Whew,” says Dr. Field finally, “do you need a break?”
“Yes,” I admit, relaxing back against my chair.
“Would you like the space heater on?” Dr. Zhou adds, and I look at him gratefully, suddenly aware that I’m in an uncomfortable state of being both chilled and sweaty with tension and exertion, and conscious of the strange sensation of the devices pressing into my shoulder heavily from both sides.
I hear him flick the switch on with his foot, and I relax further as the heat washes over me, drying the sweat on my exposed chest.
“You’re doing great,” he says, something that I would normally bristle at – I hate being praised for things that shouldn’t be difficult – but here, from him, I can’t be irritated about it.
“Thanks,” I say. “Would you mind moving my arm back to my lap for me?”
He stands up and shifts it carefully for me, and before I realize it I’ve closed my eyes. Just for half a minute, I tell myself; I need to compose myself.
“Okay,” I say, and open my eyes again. “Thanks. What’s next?”
“Next,” Dr. Field says, “we try the device.”
My heart skips. Externally, all I do is nod a little bit against my neck brace.
“We’re going to take a staged approach,” she says, looking to Priya to continue.
Priya explains, her hands already moving to the computer’s keyboard, “It’ll help you acclimate, and it’ll tell us how well each part of the program is working for you. So, we’re going to start by switching on just the first part, the filter.”
“The clean-up crew?” I suggest.
“Right.” She smiles. “We’ll need your arm on the table again. Would you like…” she looks to Dr. Zhou, as if he’s the only one who has permission to touch me.
“Yes please,” I say, and he leans over again to lift my arm to the tabletop. By my standards, it’s basically still now, from exhaustion, just lifting once in a while to knock limply against the table.
“Okay,” says Priya, “ready? You’re going to feel –”
“What will I feel?” I say hurriedly, at the same time.
After a nervous chuckle, she regroups and says, looking embarrassed, “Actually we’ve been told it’s hard to explain. The range of descriptions we’ve heard has gone from, um, ‘very quiet’ to ‘alive.’” She pauses to let me think about it. “But you will definitely feel a bit of electrical current, and the units –” she points at the devices on my shoulder “— will heat up a little.”
“Uhhh… well, okay. Shoot, then, I guess.”
She clicks her mouse, and I brace myself.
There’s a little electrical zing on both sides of my shoulder, and a sensation like a trickle of cold water running down the inside of my arm, all the way down to each of my fingertips. “Huh,” I can’t help saying, and then I feel something I’ve never felt before.
For the first time in my waking life, I feel my left arm go still. This is not just a pause, a breath in between one random gesture and another; it’s really still.
It’s as if someone has been constantly been playing, during every waking moment of my life, an annoying radio talk show somewhere in the background, sometimes loud, sometimes quiet, sometimes even silent for five or ten or fifteen seconds, but the chattering voices are always, always ready to cut in again, shatter the silence.
I wait. And I wait. I hear a full minute tick by on the clock on the wall. And my arm doesn’t move. It doesn’t move.
For the first time in my life, I feel a sense of control.
When I realize that, when the thought crystallizes, a bright surge of adrenaline, endorphins, something, goes straight to my head, and my vision almost fades out white. I have to catch my breath.
“Matthew?” Dr. Zhou is saying softly. “What are you feeling?”
I take another breath. “Control,” I say finally, and blink until I can focus on their faces again.
They’re all watching me, Dr. Zhou, Dr. Field, Priya, and Joel. Most of them have one hand pressed to their mouth, and I have to laugh, embarrassed, giddy.
“You can put another check in the ‘quiet’ adjective box for me, too,” I add. I take slow breaths through my nose. I just sit there, feeling, feeding every ounce of attention into my left arm. It feels calm, ready; I repeat that impression out loud, too.
After another moment, it’s as if everyone in the room lets out a collective breath; we’re ready for what will come next. Dr. Field shifts from foot to foot, links her hands and stretches them out in front of her. Her eyes glint with excitement. Dr. Zhou watches me gravely, the side of one hand still pressed against his mouth. He leans forward slightly.
This time, Dr. Zhou takes me through the same series of exercises that Dr. Field first asked of me, to see what I can do under my own power, minus the effects of my athetoid. Though adrenaline has sent a new jolt of energy through me, my movements are weak, tentative, uncoordinated. My arm moves limply and mostly from the shoulder. I’ve never had more occasion to appreciate exactly how little muscle mass I have, or how unused I am to using my elbow or wrist.
And my fingers remain loosely curled; I still can’t control them, open or close them; my brain just can’t see a way to do it. (Can even the second part of Priya’s program fix that?)
But I can move. I can move – of my own volition. Most of the targets, I hit after only a couple of tries. And for the first time in my life, every reminder of what I can’t do – it expands, explodes into a hope of what I could do, if I had the device, if I had time, if I had practice and physical therapy...
“That was great,” Dr. Zhou says at the end, and he sits back and runs both of his hands through his hair, the most spontaneous gesture I’ve seen him make so far. He’s not exactly smiling, but, like Dr. Field, there’s a light in his eyes.
I say nothing, still just feeling. I feel flushed, and my pulse runs quickly and lightly inside of me. I want more.
It can’t be soon enough that Priya says, “Ready for Phase 2?”
I say something that people find funny, because they laugh, but I’ve forgotten it as soon as I say it, because my mind is so bent on what must come next.
Priya turns back to the computer. I watch her as she types a couple of brief lines into some kind of terminal window, hits enter a couple of times. That’s all she does. But she tells me that it’s running, the second part of the program.
I sit and stare down at my arm, extended palm-up on the tabletop, looking pale and profoundly unnatural with all of the circles marking it, the thin trailing white and blue wires. My fingers are loosely curled inwards.
I don’t feel any different; the devices, heavy and heated on my shoulder, don’t feel any different. There’s no new jolt of electrical sensation; my arm doesn’t quiver with new energy.
But I sit and think about what it would be like to open my hand. I think about the thousand, thousand times that I’ve watched other people do it – gesturing, reaching, waving, stretching, patting, resting – and I think about what it might feel like to do it.
And then I do: I do open my hand. I watch as my fingers stretch out, all together, coordinated, smooth. I let them stay like that for a few seconds, feeling the subtle tension running up from the tendons in my wrist out through the core of each finger.
I watch as they – I – close my fingers again, bring them in slowly to make a fist. I watch as my thumb pulls in alongside those fingers, wraps around them, because I want it to.
I’ve been holding it back for what must be the past hour now, but that, finally, is when I start crying.